Not doing too well....

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
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Gilgamesh
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Not doing too well....

Postby Gilgamesh » Mon Nov 04, 2013 7:35 am

Two people emailed me saying they were looking forward to my continuing to develop the wiki, and noting that I'd said I'd be busy until Sunday (yest.). Well, thanks to an unexpected (and welcome!) freelance gig, I'll still be sort of busy. But more importantly, you all might want to keep in mind something: I'm really not doing so well right now. I'll pull myself out of it -- I'm ultimately a very strong person. But the number of challenges that have been thrown my way recently, on top of the longer-term challenges (including learning about my APOE ε4 status a bit over a year ago), has gone above an amount I'm capable of dealing with in my normal way.

And it's amazing how much worse knowing about APOE makes everything.... Breakup with girlfriend? Bad enough on its own (even if it was necessary), but then there's the knowledge that isolation increases risk for dementia! Concern that I might have a pituitary tumor? Bad enough as it is, but the stress of worrying (which will go on for a while because I'm in a country with long waits for doctors) itself increases the risk of dementia. And the worry that I might have to have general anesthesia (strongly correlated with later development of dementia in ε4-carriers) for the operation to remove the tumor. Hernia operation soon? Bad enough as it is, but not being able to exercise for a while afterwards (and possibly being forced to have general anesthesia...) will increase my risk of dementia....

Sorry to be a pill. My German friends used to say I'm the embodiment of the 19th cent. ideal of "Heiterkeit" (serene, sunny, cheerfulness). I'm aware I'm anything but that right now, and being a pill might not be so good for community development, which I wanted to focus on. But... I will try to be more heiter once I feel a bit stronger.

GB

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Re: Not doing too well....

Postby Julie G » Mon Nov 04, 2013 10:39 am

(((G))) I was going to email to check on you...then saw this. I so get you. You have so many losses piling up on top of your new health concerns. Remember your intrinsic value outside of all this crap.

Knowing 4/4 status is most definitely a loss that must be grieved. It is a loss of innocence; a knowledge of frailty that we carry with us always. Oh, how I'd love to shake it for just a day. I know you'll get that. When you lose important people in your life on top of that... Too much.

You know I'm also dealing with my pituitary tumor. And, to make you feel better...the wheels of medical science are turning just as slowly in the country with "the best healthcare on earth." I see an endo on Nov 21 (almost 2 months since my last appt!) and am still waiting for my next MRI- turned town by my insurance co. Grrrrrrr. I am also getting freaked out by this... and the wait is compounding everything. I've decided, my goal, at this point, is to have his and her surgery with you. What a blast we'd have recovering :lol:

Chin up, my pituitarily challenged friend. You are perfect and whole; complete. I am blessed to know you. The Wiki will wait.

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Re: Not doing too well....

Postby lol » Mon Nov 04, 2013 4:04 pm

You are not being a pill. You are just being truthful about how you are feeling right now. That's a good thing. That is why you will be okay with a little time.
I do the same thing. I tell my poor husband ... "I am currently keeping it together, but if one upsetting thing happens, I am going to fall apart, big time. I don't want to hold you responsible when I have my meltdown." Then I sometimes say horrific things, like - "You had better appreciate me now and enjoy my company." Or, "Don't tell me you don't like the avocado and salmon. You might regret those words later if we don't have it for dinner a couple of times/week". Guess I should mentions that my husband and I have been married for years and have a wonderful marriage.
Hypochondriac I do not want to become. But, the 4/4 thing is a pain the ass. I can't even enjoy a glass of wine without thinking about the repercussions.

It is a hard time ending a relationship, but it opens the door for someone who might be better suited for you, Golden.

This community is helpful, and you are such a big part of it. It is important to vent, and other 4/4s get it. We will be there for each other.

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Re: Not doing too well....

Postby Gilgamesh » Mon Nov 04, 2013 11:17 pm

Thanks for the responses (and to those who sent notes privately). Feeling much better today.

lol- God, this thing about wine.... So many of us are going through it. I sit there thinking: "Rotterdam Study (drinking good even for ε4s), or the study by Winblad's team in Scandinavia (bad for ε4s)? Hm... eenie meenie..." And that's just one aspect of the things we now have to think about. And so much of it's social. Beyond drinking, there's what to do about the wonderful desserts one is offered by loved ones.

Julie- The image of you and me recovering after his & her pituitary surgery (eating ice cream even!!) made my day!

GB

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Re: Not doing too well....

Postby Silverlining » Tue Nov 05, 2013 4:30 am

Hey GB! Tremendous stress here as well with my own health issues and serious health issues in all three children AND my mother. So, I totally get you. I hope there is a good friend or relative in your life to give you a patient listening ear, vocal support and a strong shoulder to lean on plus a big, rocking hug! You are so smart and are doing the right and good things for your health. The only challenge is getting your head in the right place, no matter what is happening to you that is beyond your control. I hope you are taking some quiet time to work on your soul, and I don't mean that in a religious way. It would be so nice if we all lived close together; like I said a warm hug, or hand holding in person can be so comforting. Forgive me if my words sound trite, believe me, I know achieving peace of mind irregardless of circumstances is so much harder done than said. I guess I'm saying I care and truly hope you find your way through this miasma of body/mind tribulation soon.

Thanks for sharing with us...and last if you and Julie have his and hers surgery, I will dress up as nurse goodbody and serve you both tiny, tasty, (carb-free) morsels, funny youtube videos and lock your doors at night so you can get restorative rest without interruptive hourly vital sign checks!

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Re: Not doing too well....

Postby lol » Tue Nov 05, 2013 6:22 am

Sorry, PP, to hear that your mom and children are going through a rough time healthwise. It is the piling on that makes it so hard. This is when I pull out a good book, or watch a good show - to take me away. Just finished watching Pillars Of The Earth. I loved it, followed the book pretty carefully. Also, a good run or walk. As you mentioned, talking with friends. Make a list up of what you are to do when you are feeling down, and do it.

Glad you are feeling better today, Golden. My mother always says - "Just wait it out. This, too, shall pass."

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Re: Not doing too well....

Postby Silverlining » Tue Nov 05, 2013 6:58 am

Thanks lol, these past few days have been very dark for me and I admit I'm struggling. BUT, I'm trying all my little tricks...listening to really great music, truly seeking joy somehow, some way in every day no matter how sorrowful I feel. Self talk is another biggie and last, quietly resting in my tears and fears is okay too.

GB...you've been on my mind all morning. I worry that our words aren't enough to show you the caring in our hearts. I heard the following song for the first time this morning and it really spoke to me in my sadness...many rivers to cross, many more to come, love is my foundation...take good good care GB!

http://www.youtube.com/watch?v=zd4BmfyhmGM

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Re: Not doing too well....

Postby Gilgamesh » Tue Nov 05, 2013 10:43 am

It's cold and dark here in the Scandinavian evening. I'm on the train, heading to the hospital for another scan. Silverlining, yes these words are wonderful to see! But the idea of our living a bit closer to one another is compelling. Words are powerful; physical presence, more so, I think. Just to be able sit together, hold someone's hand, offer a hug -- sometimes that's all that's needed.

But now I'm worried about you more than myself! How terrifying to have so many others in your family to think about. From a distance, a virtual hug to you! I'm at my stop. Time to get zapped again.

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Re: Not doing too well....

Postby Ski » Tue Nov 05, 2013 10:53 am

In times of stress, what seemed to work wonders for me were the adaptogens Rhodiola and Ashwagandha. Got the info from Chris Kresser's site.


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Not doing too well....

Postby Ski » Tue Nov 05, 2013 1:37 pm

And having just cycled off Rhodiola and back to Ashwagandha, I'd have to say the Ash. is my favorite, puts me on a happy "high".

You mention about wine, desserts etc this is the philosophy I take. I'm here to live this current life to the fullest extent, enjoying the things that enhance those moments. I eat healthy as best I can while still enjoying the food. I don't over indulge and if that small amount of wine or occasional pizza or dessert is going to throw me into Alzheimer's, heart disease or whatever, then I seriously, seriously doubt, abstaining 100% is going to save me from those either.

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